Ryan is now twenty-four hours removed from the last baclofen reduction. So far there are no adverse reactions… I think. My only concern is he seemed restless and fidgety throughout the night. Still, there was no indication that he was in pain. This is not all that uncommon. I’d say Ryan has an equal amount of restful nights as not. The only way to know for sure if it’s not related to the baclofen reduction is to continue to see how he does. One peaceful night is all it will take to remove my concern. Tonight would be nice!
I was particularly interested in how Ryan would behave once I up and about this morning. If he continued to seem a little off then it might be good reason to reconsider the last reduction. Fortunately, he settled down and is presenting himself like any other day. What a relief.
Assuming Ryan tolerates this well, it is a matter of weeks until we trial the complete removal of the medicine. Expecting the best right from the start, I sent the following email to the Neurologist yesterday afternoon:
The latest baclofen reduction (from 60 mcg to 45 mcg) caused no adverse effects. Ryan remains flaccid. I realize he is at a point where we could trial complete cessation of the medicine, but I’d like to play it conservative and reduce it one more time. Would you fax a script to Basic Home Infusion (fax 201-475-9630) with something like the following:
“Decrease baclofen rate to 30 mcg. After 10 days from the aforementioned reduction, rinse and fill with saline and set at minimum rate.”
I’d like to make sure Ryan is able to completely tolerate the absence of baclofen for three to six months before having the pump removed. Does this sound reasonable?
I just looked over my email and had to giggle at just how
proficient arrogant I’ve become. I’ve moved beyond suggesting treatment to actually recommending how it should be written. Oh, if I could just get my hands on a prescription pad (and a medical degree)!
Later in the day he wrote back stating that this is a prudent approach and will write the order (which was written exactly as I suggested, I might add). The wheels are in motion, my friends! The timeline falls out like this:
- April 16: Baclofen reduction from 45 to 30 mcg.
- April 26: Earliest date to trial complete removal from baclofen (pump will remain operational by delivering saline at the a minimal rate).
- August: Earliest surgical removal of pump and catheter.
I curse the day this happened. I curse the people who brought this upon him. Yet, I feel a sense of satisfaction each time progress is made— no matter how small — in slowly putting my son back together.